Hello I’m extremely new to this and would appreciate any advice or to hear about your experiences. I’m 38 and was referred to UK fertility team as part of NHS in August and have been having various tests. Doctors basic blood testing resulted in putting me on vitamin D tablets since February. Finally, I had a first baseline vaginal scan (internal) on 22 October which uncovered that I had 2 sizeable cysts 7.5cm and 5.5cm suspected endometrial. They first believed it was one on each ovary. I had to wait another month for 2nd internal scan to see if the cysts went away. They didn’t and the second scan was more traumatic because they could only identify one ovary, they even called the specialist and did an over tummy scan. It’s all been a big shock as I didn’t release - I had no symptoms. Although now I have been doing obsessive (middle of the night) internet browsing and researching about endometriosis and cysts and symptoms I realise over last two years symptoms were creeping up but I never put all the pieces together and did not suffer extreme pain. I had isolated events like unexplained sore lower back but was given pain killers. My doctor never put the pieces together either and I was consistently advised my periods are worse as I am older and didn’t decide to have children yet. I am now very conflicted since my last appointment on Thursday. My consultant said he advises me to remove both cysts through laparoscopy and then I can try IVF (my husband also has low sperm count and reduced motility) so natural pregnancy is pretty much impossible. I am very worried as my egg reserve level was checked 2 weeks ago and is extremely low AMF 1.64 should be 5-15 for my age. The risk of me having surgery to remove the cysts is that it is likely to damage my egg reserve further. I don’t have any children and this is the first time we are trying. I know I must come to terms with the fact it may not be possible for us. I wondered if anyone heard of a way that I can have IVF first and sort cysts later?
My consultant presented that the risks of leaving the cysts and having IVF first is that the drugs used to stimulate ovaries make cysts worst and plus it is harder to retrieve eggs with large cysts in the way. My head is telling me I need to remove the cysts but my heart is telling me to try to preserve my eggs for chance of a child. Any one have any experience? I would be so grateful <3
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Robins53
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Hi, I also have cysts on both ovaries although one was 7cm it has ruptured twice so my last scan was showing it at around 3cms. I’m almost 35 and have been advised to go straight to ivf. The consultant did say that had the cysts been larger they would give the option to operate but as they can access the ovaries to go straight to ivf to prevent damage to my ovarian reserve. There’s lots of mixed info on line though which makes things really confusing. Can you ask for a second opinion if you aren’t sure? I felt reassured when a different consultant advised the same as my initial one x
Thanks so much for your reply. It is difficult to find good info online and I also found this confusing. I think due to the size of the cyst the consultant is worried about rupturing or twisting and they couldn’t see my other ovary at all on my second scan. You are right I should get a second opinion. I have asked to see another consultant but I can’t see anyone until January and I heard that with winter bed crisis any chance of surgery (which i could have now in December ) would be pushed back to February or March etc. Im unsure whether the prolonged existence of the cyst itself will make reserves deteriorate but maybe not if they have suggested you should do IVF first.
I’m worried by delaying and getting a second a option I’ll be kicking myself if they give the same advice and I miss my surgery opportunity. At least I may get an explanation about the other ovary through laparoscopy and if cyst is smaller on here leave it for now to collect eggs. X
Hiya. Such a predicament for you. I had 2 cysts and had them removed via a laparoscopy and then had icsi. My partner also has a low sperm count. I did have a small cyst when going through icsi but the consultant said it was too small to affect anything. I had no symptoms either. I wasn't told that the lap would harm my egg reserve but obviously each case is different. I don't have the answers for you but I would just listen to the advice from consultants. I wish you lots of luck.
Thanks so much for your response and wishes. I guess these things are all so individual and from what I understand as the actual diagnosis and treatment is all rolled together the consultant will see what he finds during lap. Best of luck to you too xx
I had a similar dilemma start of this year. I also found out I had a cyst when trying to conceive and found out it was also endometriosis and like you had very few symptoms ! The doctors told me that they couldn’t reach my ovary for ivf so I decided to go ahead with the operation just to give myself the best chance and also so that it didn’t do any further damage such as twisting. Good luck with what you decide Claire x
Hi Robin, sorry to hear of your cysts.Your profile in terms of cysts sounds like mine, had no symptoms or pain, they only realised in June had.
However my clinic initially were saying remove before then decided to not do anything with the cysts due to my age n time is precious.
so had my stimms last n this week & egg collection is on Monday, Then they have said going to Freeze my embryos... whilst they deal with my cysts n endo lining after.
I understand yours is a very difficult decision you have to make.. as your AMH indicates low reserves, luckily mine was 16.7 when had first 1 year ago n then dropped to about 13 summat Recently.
Can they 100% not do stimming & collect eggs before & freeze n then you have no worry of damaging egg reserve by surgery.
Do keep me updated with what option you go ahead with?
Thanks for your reply Fareena I appreciate it. My wonderful mother who is incredibly supportive is beside herself as she thinks collecting eggs first should be the priority. I do too but I am inclined to understand the consultants position and almost feel an urgency for someone to explore my insides with the laporoscopy as the thing that is paining me at the minute is not knowing what’s going on inside and then how will I react if my ovaries are stimulated and what will happen/ risk to ovary with the 7.5cm cyst etc. The consultant didn’t say that I couldn’t do the egg collection first. They said I have to make the decision.
The consultants recommendation for me to have the best chance with IVF is to removed the cysts first. Thanks again for your support I will try and speak to the consultant this week. Will keep everyone updated. Susan xx
My cyst was 2.9cm on scan & other not sure.guess yours are bigger. Best to speak to consultants again. It’s a very difficult decision am glad they made the decision for me. Everyone here & consultants can guide you & give you the option but end will be your decision.
Hi, I had surgery in September to remove cysts before I was referred for IVF. However, I went to the Endometriosis Research Now conference a couple of weeks ago and they said the latest thinking is to leave cysts unless they are limiting access to the ovary in which case they definitely won't be getting eggs from the during collection anyway so you may as well have the surgery. Also, if they couldn't find an ovary on the second scan then you might have adhesions pulling it in to an incorrect position which could again make it more difficult to access for egg collection.
There's the Endometriosis UK forum on Health Unlocked which it might be useful to have a search on too.
Thank you for your comments that makes sense and my consultant is definitely worried that the 7.5cm cyst would make it very difficult for egg collection. I am really split still as not sure whether I’d be putting myself under risk for little reward by trying for IVF first. I will take a look at the Endometrisis UK Forum. Thanks so much for your comments I really appreciate it. X
I have 3 x endomteriomas on my right ovary and 2 x on my left. The biggest is on my right and measures over 5cm. I’m currently undergoing IVF (stimulation phase, hoping egg collection will be next week). I didn’t have mine removed and can see the bad and good of this.
Bad:
The cysts are in the way. This means they’re blocking access to some follicles which they’ll just not be able to collect. I was really upset last week at one of the scanning visits when the ivf doctor told me that they may not be able to access ANY follicles. Thankfully at my next scan she could see (7+) follicles that were growing and accessible. You only need one good quality egg for it to work.
Good:
It’s only the endometriosis and endometriomas that are damaging my ovarian tissue. I saw an endo consultant last year and he’d advised that I go straight to IVF. Surgery at my age (36 then, 37 now) wasn’t recommended as time and tissue was of essence.
My IVF consultant had me down regulating for 4 weeks to calm my condition down, and then stimulating on a high dose to kick start my ovaries. The protocol seems to have worked so far (touch wood) in that my endo hasn’t got worse.
I would suggest you make an appointment with and endo specialist and have their opinion on what your next steps should be. If you can, go see one privately - saves you some time.
Thanks so much for sharing I appreciate your viewpoint. It's also hard as I haven't had much chance to read up on Ivf yet so not sure what's involved. My consultant was quite sure that it would be difficult for any eggs to be retrieved from my ovary with the largest cyst 7.5cm as it looks like it's filling up the whole ovary. My other ovary couldn't be seen on the last scan. Good luck with yourself x
Hello all, I’m replying with an update.hope this reaches all the lovely ladies who responded to my post last week and sent their guidance and kind wishes. It has been a rollercoaster of a week! On Thursday last week I was advised by my nhs consultant to (quickly) go through with a laparoscopy to diagnose and treat two sizable endometrial cysts in my ovaries. I was worried about going ahead with the surgery as my ovarian reserve is extremely low even for my age. The consultant said it is likely the lap will make ovarian reserve dinisnish further. I managed to arrange a private consultation which I had on Wednesday evening with a remarkable consultant specialised in endometriosis cases - he has sadly retired from surgery but works with the main fertility team here up north. He said it was a tricky one but explained everything super clearly . Explained the best way it would be done to preserve egg reserve and reassured whilst being realistic. The conversation helped so much even though the principal advice was the same as my nhs consultant he had a better bedside manor and was so knowledable. (He recently presented on the subject at the Fertility Show). So from this appointment I confirmed going ahead with the lap surgery on nhs with my initial consultant. I was relieved to be looking for a surgery date sooner but still didn t feel 100% about the consultant. I was offered a last minute operation date for this coming week Monday...it was a bit soon to get my head around it. I did accept the surgery date though on Thursday morning as I am scared about waiting until January as this will delay any potential ivf. Then I got a call later on Thursday to say my operation for Monday had been cancelled as a very urgent case came up. Initially I was disappointed however the secretary told me about a new cancellation available the week after. She had to ask if the other consultant who now had a surgery slot would accept me or not. Nervous wait until the afternoon. However got a call late on Thursday from new consultants secretary and he was happy to take my case. I was a bit emosh as this consutant is a well known specialist and I feel lucky it’s worked out like this. The surgery is a week later so I have time to mentally prepare for it and it means I am now under the care of a consultant whom I have read positive things about and works closely with the private consultant I saw on Wednesday evening. So I am booked in for laparoscopy with him on Monday 17 December. Start of a journey, I know, as it depends on what they find in lap but feeling happier. Now keeping everything crossed for the best possible result from the surgery x
Hello, had my surgery on 17 December and consultant removed the larger cyst I had at 7.5cm and confirmed that it was an endometrioma. He took out the whole capsule and removed the outer part. He seemed to think there was still some ovarian tissue at that side. My other ovary i am lucky it turned out to be a simple cyst so this was just drained.
Overall he confirmed he could see some healthy ovarian tissue but my right ovary with the large cyst was stuck to the back of my uterus and more damaged. I started stimms drugs for our first round of IVF iCsi ten days ago and on the both scans the nurse showed me the scar tissue on that ovary and there is just one small folicle which hasn’t responded to the stimms. Staying hopeful that the 4 follicles on my left ovary can carry the magic we need to produce a small number of good quality eggs 🙏🏼
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